An epileptic writing about epilepsy, the brain, and perception

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Watched a Jazz Messengers gig from Paris in ‘59 and Lee Morgan, all of 21 years old, was unbelievable. Astonishing creativity. The chances he took and never flubbed in those solos, leaping over precipices, seeing around corners, weaving a short story’s worth of narrative into every solo…. damn. When you’re that young all this stuff is new and you’re seeing these things for the first time; your brain is a huge mass of neurons you’re exploring for the first time, and the neural pathways you follow can become established routes you’ll follow again and again. You could hear those in his playing, the licks and ideas that would come up over and over again during his career. And you’d hear things he might have explored just that once and never gone back to. As you get older and older you do that less and less, the brain hardwires into distinct paths that you perfect and improve and the other synapses wither and disappear and ideas you had at 21 will never be there again. Possibilities disappear. Eventually you don’t even see those pathways anymore. You read stuff you wrote forty years ago and have no idea of all the possibilities that were before you then but you weren’t yet good enough to write them down. A twenty something brain is a marvelous thing, a mass of neuronal potential just waiting to be shaped, trillions upon trillions upon trillions of possible thoughts, and we will never have that range of cognitive possibilities before us again.

I can’t read aloud anymore. A sentence, maybe another with brief stammers, then bam, word salad. That’s new, the word salad. Rather puts a damper on my plans of readings. Visions of readings, really, of muscular prose in dulcet radio tones, the phonemes like individual notes, words like chords, narratives as melody, rhythms rhythm, syncopating punctuation. Language is music and music is language. They run audibly through my head, these words, but stumble in the mouth. The jaw goes out of whack, electrons buzz like faulty wiring, the synapses synapsing all wrong, I can feel their confusion like low current electricity for an hour afterward, can feel it now, in fact, the jaw twitching. An epileptic’s life is an endless series of surprises at random times. new symptoms appearing instantly, new disabilities. All we can do is shrug them off. So I read these words knowing they’ll never be uttered aloud, not by me. I shrug. Whatever. Oh well. Damn.

I suppose it’s the writer in me but I doubt many of you find yourself tweaking old Facebook posts that no one has looked at in months nor will ever look at again. Though whether anyone actually reads anything is not the point, it’s the shape and dimensions of the language. It is always a little unnerving for me when someone comes up and talks to me about something I wrote, as if what I wrote actually existed in the real world, instead of inside the brain where language is, sort of mind’s eye visible, sort of tactile, as if you could feel it in your nerve-rich finger tips, or sort of beyond the senses, just words representing non-verbal knowledge, bits of information, patterns of neurons, the electro chemical energy that sparks thought, that is thought, that is beneath thought even, that is awareness, if even that, what links us to slime molds and not to stones. How it differs from the rocks.

You know, I have to confess I found my corporate day gig much more rewarding than writing. I don’t mean financially rewarding–though it was, obviously–but more personally rewarding. Writing has always been so easy, and I have to go out of my way to make it challenging, I never really get much a feeling of accomplishment from it. I mean I like writing, and I like a lot of what I do write, but none of it knocks me out. It’s just pretty writing. And now that my brain is so worn away by epilepsy that I can no longer do what I used to do at my day gig, that I was so damn good at, that’s a drag. That’s when I really know I’m disabled. I run into people I used to work with and I don’t know what to say. Of course to them the writing is so much more exciting. They can’t imagine I’d rather have a day gig. That I’d rather not be a full time writer. But I suppose when a messed up epileptic manages to hold a day dig despite all the challenges, nearly all of which I was able to conceal pretty well from my co-workers, and when he is indeed is one of the very best in his company at that gig, that’s a genuine feeling of accomplishment. Making it in the normal people’s world is rare among my sort. Most epileptics can’t manage it. I not only managed it, I thrived at it. Alas, in the long run it’ll eat an epileptic up, as it did me, the mental strain and pace causes too much neural excitement and wears out the brain, burning out the synapses connecting the neurons. Brain functions slip away and you’re left cognitively crippled. Time disappears. Planning disappears. Papers pile up, mail goes unopened, bills are forgotten. Surrounded by things that never get finished you find yourself remembering all the things you used to be able to do but now can’t. So you write about it, and the words flow like liquid gold, so easily, too easily.

My latest hobby seems to be looking online for pictures of people I used to know to remember what they looked like. The good thing is they now look like I remember them. But back in 2006 my epilepsy began acting up something fierce and I woke up one morning with my facial recognition zapped away. Think they call that prosopagnosia? Some unpronounceable Greek word anyway. Even faces I knew extremely well looked alien to me, and I could walk right up to people I’d known for years and seen every day and not recognize them till they spoke. I remember looking up people’s pictures–on what I don’t know, this was before Facebook–and they looked so different. Of course, if I tried to see in my mind’s eye how I remembered them there would be a fleeting mental image that would immediately dissolve into nothing. Literally dissolve. There’d be a half second glimpse of their face and then it would just granulate into pixels and then blackness. It was a trip. For the first couple years I was always startled at how different you all looked. Even my wife. And when I spoke to you I’d find my gaze looking at things you never normally notice. Without the usual focus, my eyes would wander as if I were studying a portrait, I’d see your skin–amazing the pores we have–and hair, and facial structure. Ears. Wrinkles. Shaving scars. It was incredibly distracting.

For a while I couldn’t recognize profiles at all, even my brother’s. Some pretty funny shit went down, all of it embarrassing. Not so funny, though, was how suddenly I couldn’t read people. Talk about unnerving. I’d be talking to someone and have no idea how they were reacting. I could not tell if I was bothering them, or boring them, or what. Inevitably, I began avoiding people. Eventually I learned to visually recognize you all in other ways, by your voices, body language, whatever, and I did eventually manage to begin reading you all again, though nowhere nearly as well as I once had. It is funny when you go from being very adept at something to instantly being lousy at it. After a couple years I just got used to it. Though I still avoid people more than I did before. It’s inevitable. As a species we read each others’ faces so well. Indeed, we impart more information with facial expressions than we do speaking. Lose that skill and you’re a little fucked. And mine was a relatively mild case. I wasn’t completely face blind. Some people are.

But now my mind’s eye images seems to match your looks. That’s a relief. Even pictures of people I haven’t seen in years match my memory of them. It’s a significant recovery. I’ve long dreaded a repeat of my bad epilepsy year of 2006, because among other things I didn’t want to go though that prosopagnosia bullshit again. It was really inconvenient. Crippling even. And it was also embarrassing. I took to wearing shades because I realized that people could tell I wasn’t looking at what people normally look at when they are talking to you. Mainly the eyes, I think. You can tell when some idiot is looking at your hair or chin or ears when you are trying to talk to him. So shades helped.

Although there was a downside to wearing shades. Like the time I was walking into work and found myself behind a lady I didn’t recognize. Must be a new employee, I figured. I caught her profile as she slipped in the door ahead of me. Didn’t know who she was, but she was definitely hot. Safely behind my shades I was checking her out. I was forty nine years old and safely behind my sunglasses acting like a high school kid. I watched her walk ahead of me, her hips sliding this way, then that, like dancing a slow salsa. That’s America to me, I thought to myself. What it meant I do not know but I distinctly remember thinking that to myself because suddenly the lady in front of me stopped and turned around. What are you looking at, she asked. I knew that voice instantly. It was the lady I’d worked with for a decade. Probably my closest friend in the whole building. We talked every single day. We’d sat next to each other for years. She was gorgeous, sure, but I had never ogled her once. I worked with her. She was a friend. There are rules about those things.

But unfortunately I hadn’t recognized her by her profile and besides I hadn’t been looking at her face anyway. Suddenly I felt so stupid, like a forty nine year old man caught acting like a high school kid. I’d never been so busted in my life, not even as a teenaged high school kid. But she was also one of the very few people at work who knew about my sudden face blindness. I spluttered an apology that I hadn’t recognized her. I know you didn’t, she said, that’s why you were checking out my ass. The epilepsy had also rendered me with one hell of a stutter, and thoroughly flustered I stammered something inane. You idiot, she said, take off those stupid sunglasses, you’re inside. I shoved them in my pocket. You’re blushing, she said, and cackling a pinay laugh went up the stairs to her desk. Aren’t you coming she asked. I said I’ll take the elevator. My knee, I said. My knee was fine. I just needed a few minutes alone to stop blushing. Sometimes it takes minutes. And then sometimes it takes forever. On my way to the lobby I stopped by the restroom and splashed my face with cold water. It didn’t help. I made my way to the elevator. Just as the doors were closing someone yelled hold that elevator! Half a dozen women got on, still feeling their two martini lunch. I knew all of them. Why are you blushing? the loudest of them asked. What did you do? They started snickering. He probably got busted checking out some babe’s ass! Instantly I flushed crimson again, and you’d think it was the funniest thing they’d ever seen. How do women know these things? I tried to say something and stammered.

Mortified, I made a mental note that sunglasses and epilepsy don’t mix.

(From a note to a friend suffering from a mysterious and incurable vertigo and damn if the doctors could figure out why.)

A clean bill of health does not mean the problem could not be neurological. It might just mean that somewhere in your neuro network a few neurons, or maybe a mess of neurons, are out of whack. I found that studying neurology helped me to make it through the randomness of epilepsy, with all kinds of neurons out of whack, and see it as not so much a medical problem as an engineering one. Whenever the brain began perceiving things wrongly–as in your brain still being convinced you have a balance problem–I learned how to work with it and either correct my brain’s incorrect assumptions or work around them. Just coming up with fixes and work arounds. Thus I was able to function successfully (more or less) in a world full of normal brained people. The neurologist V.S. Ramachandran‘s wonderful (and wonderfully readable) book The Tell-Tale Brain, in particular, was a real help. Brain patients are always fascinating anyway, mistaking wives for hats and all, and Ramachandran has come up with some extraordinary fixes (a jerry rigged box full of mirrors, for instance) for his patients that oft times just got the brain’s sense of self (i.e., the parts of the brain that connects the mind with the body that holds it) to realize that it was actually the problem. More often than not looking at the carefully placed mirrors so that the brain could see the missing arm from the brain’s point of view (and not a mirrored reflection) cause the phantom pain to disappear instantly. Your phantom vertigo–caused either by a virus or statin drugs, both done with ages ago–might be like those who suffer phantom pain in a long lost arm or leg.

Incidentally, some of the exceptional skills and capacities your specific brain has–the way you can hear and transcribe vast orchestrations in your head perfectly, as if a symphony is playing in front of you–could actually be the root if the problem. You never know. But extraordinary cognitive abilities usually lead to unplanned difficulties at some point. Which is probably the reason that not everyone has those abilities–they have been selected against through natural selection. Genius does have its downside.

The plasticity of the brain defies belief…a woman born without a Cerebellum and not diagnosed till age 24. Which means that even though the genes that would normally be involved in cerebellum development were missing (actually they were there, they were just unable to perform this set of tasks), other genes were able to use other parts of the brain to perform the cerebellum’s tasks. The brain is able to function the way a drummer lays down a complex web of polyrhythms. That is, a drummer has two feet and two hands, but is able to create varying patterns by combining elements of the same hands and foot pedals striking in different but simultaneous patterns. And the brain can use the same neurons in varying patterns by making varying combinations of neurons…a neuron firing can fire off other neurons simultaneously so one neuron can be part of various chains of neurons performing various functions. It’s insanely complex.

I suspect this woman needs more fuel to keep at her peak alertness since a smaller brain means that neurons are firing more often and burning through the cells stores of potassium and manganese (which are what neurons use to spark) than a healthy brain. My wife has recovered remarkably from being without a heartbeat for four minutes, but her thinking fades if she fails to eat properly throughout the day. That’s because she lost a few million neurons when oxygen stopped being delivered to the brain, and since then her brain has recovered most of its former capabilities through plasticity–other neurons taking over. But those neurons are now being used more, which means they are firing more, which means they run low on the fuel–potassium and manganese, mostly–faster than they did prior to her heart stoppage.

A ten year old told me about this story. Brains are so cool, she said.

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My latest writing on: Brick Wahl

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My latest writing on: Brick's History

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My latest writing on: Brick's Politics

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My latest writing on: Brick's Picks

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